Campaign man

Wired Science has an exclusive interview with Ari Ne’eman, the first openly autistic White House appointee in history, who has been given a place on the National Council on Disability that advises the president on equality for disabled people.

Ne’eman is an advocate of neurodiversity, which rather than automatically seeing conditions like autism and Asperger’s syndrome as diseases to be cured, understands them as another form of human variation that should be accepted.

As a society, our approach to autism is still primarily “How do we make autistic people behave more normally? How do we get them to increase eye contact and make small talk while suppressing hand-flapping and other stims?” The inventor of a well-known form of behavioral intervention for autism, Dr. Ivar Lovaas, who passed away recently, said that his goal was to make autistic kids indistinguishable from their peers. That goal has more to do with increasing the comfort of non-autistic people than with what autistic people really need.

Lovaas also experimented with trying to make what he called effeminate boys normal. It was a silly idea around homosexuality, and it’s a silly idea around autism. What if we asked instead, “How can we increase the quality of life for autistic people?” We wouldn’t lose anything by that paradigm shift. We’d still be searching for ways to help autistic people communicate, stop dangerous and self-injurious behaviors, and make it easier for autistic people to have friends.

But the current bias in treatment — which measures progress by how non-autistic a person looks — would be taken away. Instead of trying to make autistic people normal, society should be asking us what we need to be happy.

This issue is a particularly heated one, not least because describing someone as ‘on the autism spectrum’, or even ‘autistic’ tell us little about the individual.

People with a diagnosis of autism can range from highly intelligent but socially atypical individuals, to people who are unable to attend to their most basic needs and are severely cognitively impaired.

This diversity means that anyone seeming to champion autistic people is assumed by one party or other to be an interloper who doesn’t fully represent the range of life experiences, either of individuals or families with autistic members.

Ne’eman is certainly a powerful and articulate speaker and as the first autistic person to be appointed to an official advisory position, he will be seen as the ‘voice of autism’ whether he likes it or not.